GeneWatch UK PR: Government moves to allow DNA database of whole population to be built in NHS without consent

27th
January 2012

Government moves to allow DNA database
of whole population to be built in NHS without consent

Responding to
the Department of Health's consultation on the NHS Constitution, which ends
today, GeneWatch UK warned that the proposed new rules on personal data in the
NHS would facilitate the creation of a DNA database in the NHS by stealth.

The draft
Constitution allows the collection and sharing of medical data for 'research'
without seeking the fully informed consent of individuals (1). GeneWatch UK's
response (2) shows how a proposal to sequence and store the whole genomes of
everyone in the NHS could then be implemented. People would have a right to
object but not to stop their data being used.

"Most people want to support legitimate
medical research" said GeneWatch UK's Director Helen Wallace, "But it is a big mistake to allow private
medical records and personal genetic information to be data-mined by private
companies without people's knowledge or consent. Storing whole genomes in
medical records will allow every individual and their families to be identified
and tracked. Medical and genetic data will also be exploited for personalised
marketing".

In its
response to the consultation, GeneWatch questions whether the proposed new
rules meet existing legal and ethical requirements for use of patients' data. Examples
of what the proposals could mean for patient privacy in practice include:

A person's employer or a
pharmaceutical company could be classified as a "researcher" and thus gain
access to data about individuals who suffer from a workplace-related illness or
an adverse drug reaction: they are likely to be able to use "deductive
identification" (based on the occurrence of a rare event with other information)
to work out who these individuals are. They could try to look for data that
might allow them to blame the condition on a person's genes, or for unrelated
personal data (e.g. sexual health or use of drug rehabilitation services) that
might be used to discredit that individual should they make a claim against the
company.

A person's DNA can be obtained easily
from a beer glass, coffee cup or toothbrush. Anyone who could get that DNA
sequenced could search it against stored variant files and identify the
individual, either directly (if they have access to the medical record in the
NHS or the de-identifying system) or indirectly by the clues stored in their
public records. They could also look for partial matches to identify that
person's relatives (including paternity and non-paternity). This process could
be used by the police or state to track individuals who have not committed any
crime (creating a "surveillance society"). It could be used by criminals to
track undercover police officers, witnesses on protection schemes, and
potential victims (including women and children fleeing abuse). It could also
be used by individuals wanting to settle disputes about paternity and
non-paternity or to expose such information in the press.

The same process could be used to
find out what personal medical information is linked to a particular genome,
including e.g. use of medical services, including sexual health, or specific
information about a disease or carrier status for a genetic disorder. This
might be of interest to the press, private detectives, parents, neighbours, or
insurance companies. Unscrupulous charities might even use the data to seek
donations from the relatives of anyone with cancer.

For further information contact:

Dr Helen
Wallace: 01298-24300 (office); 07903-311584 (mobile)

Notes for Editors:

(1) The draft Constitution replaces the requirement that researchers seek fully informed consent from individuals to
take part in research studies with the wording: "You have the right to request that your confidential data is not used
beyond your own care and treatment and to have your objections considered, and
where your wishes cannot be followed, to be told the reasons including the
legal basis". This undermines requirements for fully informed consent which
are laid out in the World Medical Association's Helsinki Declaration, which
states that each potential subject must be adequately informed of the aims,
methods, sources of funding, any possible conflicts of interest, institutional
affiliations of the researcher, the anticipated benefits and potential risks of
the study and the discomfort it may entail, and any other relevant aspects of
the study. The potential subject must also be informed of the right to refuse
to participate in the study or to withdraw consent to participate at any time
without reprisal.